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Teddy’s heart journey at GOSH

Teddy had his first heart surgery at just two days old. Now three years old, Teddy continues his treatment under specialist care at GOSH. This year Teddy and his family will be taking part in the London Santa Dash to give back and support Great Ormond Street Hospital.

Teddy’s heart journey at GOSH

Teddy has a condition called Hypoplastic Left Heart Syndrome (HLHS) which means the left side of his heart did not form properly during pregnancy. This condition affects normal blood flow and puts immense strain on the right half of his heart, which has to do twice the work.

His parents, Claire and Alex discovered Teddy's serious heart condition during Claire’s 20-week pregnancy scan that subsequently brought their family to the specialists at Great Ormond Street Hospital (GOSH).

“I remember getting the news in our local hospital in Luton, walking out of the doors into the carpark and then receiving a phone call from GOSH almost immediately - to come in for scans the very next day. I was supported by their specialist team during the remainder of my pregnancy,” recalled Claire.

Once Teddy was born, he was transferred to GOSH from his local hospital where he had his very first heart surgery aged just two days old – a daunting process for the young family, particularly with Teddy’s sisters at home.

“It was all a massive whirlwind. Our daughter Emmie was only 11 months old, and our eldest daughter Kahlen was six, so it was incredibly difficult to say goodbye to them.”

Fortunately, the whole family, including Teddy’s sisters, stayed in GOSH Charity accommodation as Teddy recovered well from his first operation. They were delighted when after two and a half weeks in hospital they could return home, with Teddy, as a family of five for the first time.

A sudden deterioration

“Teddy was seven weeks old when, out of the blue, he didn’t look right – I took him to our local hospital. Suddenly, he suffered a cardiac arrest and they spent 35 minutes resuscitating him, and then we were CATS emergency transferred back to GOSH” remembers Claire.

Teddy’s prognosis was very poor and there was a chance he could have brain damage. Teddy spent a long time in intensive care and had open heart surgery the day he turned three months old, as the doctors at GOSH fought to save his life.

Teddy pulled through this critical operation and “came back to the ward a different child”. Following a further three and a half long months of recovery, Teddy’s family made it home again.

The road ahead

Three years later, Teddy has grown, become more active and loves playing with his two older sisters. As he has developed, his condition left him out of breath, often tired and needing further procedures. The next step in his heart journey has been the ‘Fontan Procedure,’ which enabled oxygenated and deoxygenated blood in his heart chamber to be separated for the first time.

“The operation went well and amazingly, he was out of CICU and back onto Bear ward in just five days. We were blown away by his recovery but there were more worrying moments when he later contracted pneumonia. Thankfully, after another stint in CICU, he bounced back.”

Teddy’s heart is not fixed but as he continues to grow, the hospital will continue to support him on his journey.

“If his heart deteriorates, then the next option is a heart transplant. But his medical team want him to keep his own heart for as long as possible – I’m hopeful that he might never need one, and we don’t know what options medicine could offer in the future.”

Giving back to GOSH

On Sunday, 9 December 2018, Teddy’s family and friends from Bear Ward will be taking part in the London Santa Dash, to support the hospital that continues to be a huge part of their lives.

“I’m looking forward to everyone being together. Although everyone’s experiences in the hospital are different, everyone will be there for the same reason – we all want to give something back. You’re having fun and doing good at the same time.”

Sign up today and join Teddy’s family supporting GOSH Charity at London Santa Dash, the festive 5k or 10k fun run around Clapham Common! The money you raise will help families like Teddy’s be together this Christmas and help fund vital services for so many seriously ill children from around the UK who are cared for at the hospital.

Jasper was born with a bleed on his brain and was rushed to Great Ormond Street Hospital (GOSH) for emergency surgery. His treatment is ongoing, but Jasper won’t let it stop him from joining his family and supporting GOSH at the London Santa Dash!

Thirteen-year-old Grace first came to Great Ormond Street Hospital (GOSH) to be treated for a form of cardiomyopathy, a rare heart condition. During her treatment at GOSH, Grace was put on the waiting list for a heart transplant.

Just four years ago, Indigo, aged five was diagnosed with a brain tumour the size of a tennis ball and her prognosis was very poor. After tackling major surgeries, further brain injury and a long recovery with incredible determination and resilience, Indigo will be taking part in this year’s London Santa Dash to support Great Ormond Street Hospital (GOSH).